A Monumental Day: Visiting the White House as a Narcolepsy Advocate

by julie on June 10, 2016

On June 2, 2016, I had the honor of attending the White House/Stanford Medicine X workshop, “Engaging Participants as Partners in Research”, as part of President Obama’s Precision Medicine Initiative. This event far exceeded my wildest expectations. But first, some context.

It’s Gonna Be a Good Day:

The day before going to the White House, on June 1st, my non-profit, Project Sleep announced the incredible 14 recipients of this year’s Jack & Julie Narcolepsy Scholarship! I was up before dawn making final tweaks to the announcement, packing my suitcase and heading to my day-job.

After work, I flew cross-country on a red-eye, arriving at Washington Dulles at 7:30am on June 2nd. Stepping off the plane, my vision was blurry and my legs wobbly (signs that my cataplexy was lurking, since I’d barely slept and was unable to take my nighttime medication on the plane). Thankfully, my daytime stimulants and a tiny bit of Effexor (which I take on an emergency basis to knock out my cataplexy) helped me to re-gain trust in my body to carry me through the day. And the miracle workers at Drybar made me look like a human!

7:30 a.m.

10:30 a.m.

Patient Advocates Take Over the White House:

Arriving outside the White House at 11:00am, I smiled big re-uniting with my MedX family of patient advocates, healthcare providers, government officials, industry representatives and technology and design experts. Though coming from diverse backgrounds, we all share a common belief in the MedX and Everyone Included™ movement.

The mission of Stanford’s Medicine X program is to advance health care, technology, clinical care, and research through its Everyone Included™ framework. Everyone Included™ is a model for health care innovation that values everyone’s expertise and includes all relevant stakeholders in conversations about the future

As we shuffled our way through security and onto the White House property, the joy in the air was palpable. We were taking part in something historical and everyone knew it.

See, beyond this being a ground-breaking moment for narcolepsy to be included in this high-level national healthcare discussion, this was a monumental day for patient advocates to be featured on the national stage as important partners in advancing precision medicine.

The White House Workshop:

“This is a formal White House room where treaties are negotiated,
and now it’s covered in sticky notes.” – DJ Patil

The workshop kicked off with inspiring introductory remarks from Dr. Larry Chu, Executive Director of Medicine X, Claudia Williams, Senior Advisor of Health Innovation and Technology at White House Office of Science and Technology Policy (OSTP), and DJ Patil, U.S. Chief Data Scientist at White House OSTP.

Next, there were a series of thought-provoking MedX-style ignite talks. My favorites were Elizabeth “Eli” Pollard, Executive Director of the World Parkinson Coalition; Kate McCall-Kiley, 2015-2016 Presidential Innovation Fellow; Craig Lipset, Head of Clinical Innovation for Pfizer; and Jose Merino, US clinical research editor for the BMJ.

“Inclusion, like Democracy, is messy and hard, but it delivers invaluable gifts.” –Eli Pollard

The BIG Brainstorm:

“I think I just drew on the wall with a sharpie.”
– Anonymous White House official

Armed with sticky notes and sharpies, we began circulating around the room – meeting new friends and identifying areas of challenge and opportunity in research. From our mass of sticky notes, ten key opportunities for progress emerged. We split into smaller groups to design solutions for each.

How Can We Make Research Delightful?

I decided to join group #6, tasked with exploring: “How do we make research delightful?” It had a lot to do with respect, feelings and valuing patients.

Team #6 was small but mighty. Within a few minutes – the ideas were flowing and everyone built off each others’ ideas. After what felt like 10 minutes but was more like an hour, time was up!

At this point, we found out that our group needed a representative to “pitch” our design solution in 4 minutes to the big group. We’d had lots of great ideas but wait, what exactly was our solution?

I don’t know what came over me, but I quickly raised my hand for the job. I hadn’t slept for over 36 hours and maybe I was delirious, but oddly I felt REALLY confident. Channeling my inner-lawyer, inner-narcolepsy-spokesperson and Toastmaster, I quickly weaved together a pitch. Meanwhile, I told my team, “I got this.” No one objected, so I was hired.

Raising My Voice

“Speak your mind even if your voice shakes.”― Maggie Kuhn

Once back in the big room together, the pitches began…. I quickly realized that I would be expected to hold a microphone. This was daunting, what if I had cataplexy and dropped the mic? But before I could think/worry much more, it was my turn.

In this official White House room where treatises are negotiated, I rose from my chair and reached out for the mic.

“Hi, I’m Julie Flygare, a narcolepsy advocate,author and founder of Project Sleep to make sleep cool.”

I presented the problem (that research isn’t delightful, and not even respectful), I shared a story exemplifying this, and then pitched our team’s design solution (a framework for recognizing the value provided by participants in research). I did it!

Afterward, a few amazing people thanked me and congratulated me on the pitch. I look up to these individuals as role models, so I tried to nod and smile like this praise was normal. Internally, my heart was doing jumping jacks of joy! What a great ending to the day.

A way forward:

This great workshop and the remarkable progress that it represents was made possible by an extraordinary team of people. Special thanks to Dr. Larry Chu, Nick Dawson, Claudia Williams, and the entire Stanford Medicine X staff/family/community (those in DC and those who were cheering from afar).

Thank you for your kindness, your passion, grace and leadership. Thank you for standing up for what is right and showing the world what is possible through real collaboration and mutual respect. I am forever grateful.

About the event hosts:

The White House Office of Science and Technology Policy (OSTP)’s mission is to provide the President and his senior staff with accurate, relevant, and timely scientific and technical advice on all matters of consequence; to ensure that the policies of the Executive Branch are informed by sound science; and to ensure that the scientific and technical work of the Executive Branch is properly coordinated so as to provide the greatest benefit to society. This event advances the Office of Science and Technology Policy’s mission and the President’s Precision Medicine Initiative by identifying opportunities and strategies to have participants participate as equal partners in research.

The mission of Stanford’s Medicine X program is to advance health care, technology, clinical care, and research through its Everyone Included™ framework. Everyone Included™ is a model for health care innovation that values everyone’s expertise and includes all relevant stakeholders in conversations about the future.

Julie,
I don’t think you have any idea how profound your statement is: “Not talking to your Narcolepsy patients about social support is a medical error.” This should be the standard that JACHO uses for every retrospective medical audit it does, especially for invisible diseases like Narcolepsy/Cataplexy which can run the whole range of ADL’s and IADL’s that unless a practitioner has the same disorder or lives with a person who does, they are clueless about what actually happens to a patient once we have our 15 minutes of fame with a doctor and leave….